A Question About Enterolab

[daffadilly]

Right on Cara !!!!!!!!!!!!

especially for children the blood tests are not accurate. sometimes I wonder how many of those blood tests are actually run or if some lab person just wants to go home early.

I talked to a lot of celiac people yesterday (in person) & I had more than one person that repeated my saying - test for the genes - if you have the genes, you need to be gluten-free. Well to keep from hacking a bunch of people off, I usually say if you have the genes & symptoms... But we all know that some people have no symptoms & have flat villi.

imresident, Enterolab nor anyone else really needs your approval nor will any of your arguments dissuade anyone from using Enterolabs. People are angry because they have suffered needlessly for years. I was talking to a 73 year old woman yesterday & she was livid still, after being gluten-free 8 months, about all the treatments that doctors had put her thru and you know how they found out what was wrong with her? A friend told her that "hey, you know you have about the same problems as my husband". She & her husband are having their whole family tested thru Enterolab.

I am part of the babyboom generation & you know those of us that have been sick our whole lives & have fought the medical community for treatment while exercising & doing everything that we could to stay healthy & have seen so many bad changes in the medical community - we are fed up. We are disgusted that we have suffered needlessly our whole lives. We are frightened that we have passed these genes onto our children and now our grandchildren are also suffering. Enterolab is a God send to us. We are so willing to send in our money & get a gene test & a poop test & find out if we are gluten intolerant, for ourselves & our families. We are sick of our grown children not being able to go to the doctor that they want to & having to get referrals and justify any little thing they want done, like heaven forbid they want to get a mammagram before they are the prescribed age according to the medical community to justify the time and expense. We like being able to order the test without a doctors prescription (becasue frankly we are all tired of the roll the eyes treatment that we get from doctors) and we also like it that there is no official record of the results on our medical files. Because for our children we do not want this to keep them from getting insurance in the future or other consequences.

So just think how many babyboomers there are out there that are figuring this celiac stuff out & what a huge part of the population our children and grandchildren are, and you will get an idea of the surge of popularity that Enterolab is experiencing.

[Canadian Karen]

Monday » September 11 » 2006

Celiac disease on the rise

It's not diet deja vu, more people are avoiding the bread basket

Rosie Schwartz

National Post

Tuesday, August 22, 2006

CREDIT: Jupiterimages

More Columns By This Writer

:: The ABCs of eating

:: The ABCs of eating

:: Disease fighters part of gardens' healthy bounty

:: Lost slice of life

Don't be surprised if you start noticing more people avoiding the bread basket. No, it's not a case of diet deja vu. Low carb is not making a comeback. But the diagnosis of celiac disease is on the rise. Or at least that's what the U.S. National Institutes of Health expects as the group embarks on a heightened awareness campaign for health professionals.

Through the campaign, launched in July, the experts hope to increase physician awareness of the disease, resulting in earlier diagnosis and better outcomes for celiac patients. Also known as gluten-sensitive enteropathy, celiac disease occurs when the immune system responds to the consumption of gluten with the production of antibodies. The disease can cause delayed growth in children, certain skin rashes, infertility, osteoporosis and an increased risk for certain cancers such as lymphoma.

The term gluten includes a group of proteins found in the grains wheat, barley, rye, kamut, spelt, triticale and possibly oats. While oats themselves may not trigger a response, it may likely be cross-contaminated by other gluten-containing grains. But for those with celiac disease, consuming gluten can have a wide range of adverse consequences including damaging the lining of the small intestine and poor absorption of a range of nutrients.

Celiac disease was thought to be somewhat rare, affecting only about one in 3,000 people in North America. For physicians, the typical picture of a patient who had undiagnosed celiac disease was an unwell-looking emaciated person with a host of gastrointestinal complaints.

Well, it's now apparent that the experts were way off in their estimates. The incidence in North America is around one in 133 people. And those with the disease can suffer from a variety of vague symptoms, making it much harder to even suspect celiac disease. In addition, it can strike at any age.

The range of gastrointestinal symptoms can include chronic or intermittent diarrhea and possible weight loss. But those with vague abdominal bloating, gastric reflux or heartburn, or those thought to have irritable bowel syndrome, may actually have celiac disease.

Also on the list are those with iron deficiency anemia, lactose intolerance, infertility, osteoporosis or autoimmune illnesses. And many people with the disease may be anything but emaciated and may be struggling with weight management issues.

Many health care professionals are not aware of the updated incidence figures on celiac disease nor the change in thinking about the typical person with the disease. Added to the mix is the method of diagnosis. It is a very confusing state of affairs for those who must come up with the diagnosis. There are relatively new blood tests that can be used to help pinpoint cases. But all across the country, medical laboratories are using the old ones such as the determination of anti-gliadin antibodies -- tests that have been shown to be unreliable.

When a physician orders a celiac disease screen in many health centres, it's not the recommended state-of-the-art tests that are performed. This is occurring for a few reasons. One is that many labs aren't aware of and don't perform these tests -- known as IgA antihuman tissue transglutaminase and IgA endomysial antibody immunofluorescence -- both of which are related to antibodies produced when gluten is consumed by those with celiac disease.

Another reason for the lack of appropriate testing is that there is not uniform coverage for these tests by provincial health care plans. For example, in Alberta, there is no extra charge for having these tests, while in Ontario, an individual has to pay out of pocket for them. The unreliable ones, though, are paid for.The Canadian Celiac Association is also lobbying for the inclusion of the test names on lab forms so that the requests for the tests are simplified.

And for those who have been avoiding gluten, there's another real concern about making a diagnosis. The tests may reveal a false result because in order for the antibodies to be produced and measured, gluten must be regularly consumed prior to the test. But for a definitive diagnosis of celiac disease, a biopsy of the small bowel must be done.

The treatment for celiac disease is straightforward -- a gluten-free diet. With no gluten being consumed, over time many of the associated health problems then may disappear. But it's not just about avoiding the gluten-containing grains outright. The assortment of products containing gluten is astounding. Terms such as hydrolyzed vegetable protein, modified food starch or modified starch, caramel colour and malt or malt flavouring on an ingredient list in such products as soy sauce can signify the presence of gluten. Even beer, which is almost always made from barley, is on the gluten-free hit list.

Following a gluten-free diet may be a clear-cut treatment, but easy it's not. To the rescue is Shelley Case, a Regina-based dietitian and one of North America's foremost dietary experts in the field. The latest edition of her book, Gluten-Free Diet -- A Comprehensive Resource Guide, is an invaluable tool that should be in the kitchen of every person who has celiac disease.

It should also be on the bookshelves of health and food service professionals. Besides providing an overview of the disease and diet, Ms. Case has provided a wealth of details including the foods where gluten may be unknowingly found. Preparation basics, recipes and sources for alternative grain products such as quinoa, sorghum, amaranth and millet are also included along with more than 2,600 gluten-free specialty foods listed by company.

The book is available at most bookstores across Canada or can be ordered from Ms. Case's Web site at www.glutenfreediet.ca.

- Rosie Schwartz is a Toronto-based consulting dietitian in private practice and is the author of The Enlightened Eater's Whole Foods Guide: Harvest the Power of Phyto Foods (Viking Canada).

nutrition@nationalpost.com

© National Post 2006

IMResident,

I think one thing you are overlooking is that although you might have 100% faith in the blood test and what it is supposed to do, you are forgetting to factor in the labs and the people who are supposed to administer these blood tests. I have to wonder how many labs in Canada or US have bothered to update and get current with the new blood test that is more accurate. My guess would be not too many, considering the cut-backs in health care and general lack of knowledge of this disease.

Just another perspective.......

Karen

[IMResident]

Speciicity 58% - almost half of the cases the test said were positive didn't actually have celiac disease.

I want to clarify what specificity of 58% means for the fecal antibody testing.

In the case of the study there were 24 people with celiac and 60 controls (completely healthy people without any intestinal or gluten sensitivity symptoms). The fecal testing found about 22 of the celiac people positive for celiac as well as about 20 of the completely healthy people.

This means that if this test is applied to the real world where the prevelance of celiac/gluten sensitivity is lets say around 5% of the population (a high number but let's say that's true), it will find 30% of the normal healthy people positive for celiac disease. In other words if you get a positive result from enterolab it is likely to be 85% false positive and 15% true positive, making it a truly useless test.

Many people have mentioned that doctors will sometimes do only one test for celiac, but it's possible to just ask the doctors to do all the tests and insist if they don't want to do it, and even if the insurance doesn't pay for it, it still cheaper than Enterolab testing.

[prinsessa]

I want to clarify what specificity of 58% means for the fecal antibody testing.

In the case of the study there were 24 people with celiac and 60 controls (completely healthy people without any intestinal or gluten sensitivity symptoms). The fecal testing found about 22 of the celiac people positive for celiac as well as about 20 of the completely healthy people.

This means that if this test is applied to the real world where the prevelance of celiac/gluten sensitivity is lets say around 5% of the population (a high number but let's say that's true), it will find 30% of the normal healthy people positive for celiac disease. In other words if you get a positive result from enterolab it is likely to be 85% false positive and 15% true positive, making it a truly useless test.

Many people have mentioned that doctors will sometimes do only one test for celiac, but it's possible to just ask the doctors to do all the tests and insist if they don't want to do it, and even if the insurance doesn't pay for it, it still cheaper than Enterolab testing.

But how do you know that the 60 controls were completely healthy? I wonder what percentage of the population really has gluten intolerance. I didn't have intestinal symtoms until a year or so after the birth of my son. I might have tested postive to the test before having any symptoms. (btw, I tested negative to the blood test but have had positive results from going gluten free....I haven't been tested by Enterolab yet, but I am testing my children). Just because a person doesn't have symtoms of gluten intolerance it doesn't mean that they aren't gluten intolerant.

I know quite a few people (especially in my family) who have intestinal problems, but don't really want to admit to it. Is it normal to have tons of gas and/or be on the toilet for long periods of time? I don't think it is. Both of those things went away for me after going gluten free.

I hope I am making any sense....I some how got glutened over the weekend and my brain is a little foggy

[CarlaB]

Many people have mentioned that doctors will sometimes do only one test for celiac, but it's possible to just ask the doctors to do all the tests and insist if they don't want to do it, and even if the insurance doesn't pay for it, it still cheaper than Enterolab testing.

Yea, right. How was I supposed to know what tests were supposed to be done when I expected celiac? I just went in and asked for a blood test. By the time I was educated enough to know one test wasn't enough, I was already gluten-free. In your perfect, theoretical, dream world, you might be right. But that's not what the average person experiences.

In the case of the study there were 24 people with celiac and 60 controls (completely healthy people without any intestinal or gluten sensitivity symptoms). The fecal testing found about 22 of the celiac people positive for celiac as well as about 20 of the completely healthy people.

This means that if this test is applied to the real world where the prevelance of celiac/gluten sensitivity is lets say around 5% of the population (a high number but let's say that's true), it will find 30% of the normal healthy people positive for celiac disease. In other words if you get a positive result from enterolab it is likely to be 85% false positive and 15% true positive, making it a truly useless test.

This is true for the tests you presented. Dr. Fine's tests apparently have different results. We'll have to wait to see what his studies show.

Again, I will ask, are you trying to gather information, or are you trying to convince us that Enterolab is invalid? Your mind seems to be made up already.

[jerseyangel]

Yea, right. How was I supposed to know what tests were supposed to be done when I expected celiac? I just went in and asked for a blood test. By the time I was educated enough to know one test wasn't enough, I was already gluten-free. In your perfect, theoretical, dream world, you might be right. But that's not what the average person experiences.

Even after I was diagnosed, my mom was only given one test--not the whole Celiac Panel..

This was after I sent her the list of the tests included in the panel to show to her doctor. I have no idea why her doctor didn't have the complete panel run, but my mom has complete faith in her doctors, and when this *one* test came up negative--despite years of what I now realize were Celiac symptoms--she chooses to believe she's not affected.

[IMResident]

Yea, right. How was I supposed to know what tests were supposed to be done when I expected celiac? I just went in and asked for a blood test. By the time I was educated enough to know one test wasn't enough, I was already gluten-free. In your perfect, theoretical, dream world, you might be right. But that's not what the average person experiences.

This is true for the tests you presented. Dr. Fine's tests apparently have different results. We'll have to wait to see what his studies show.

Again, I will ask, are you trying to gather information, or are you trying to convince us that Enterolab is invalid? Your mind seems to be made up already.

Actually antibodies levels decline pretty slowly (about 10% per month) so being gluten free for one or 2 months is not a problem and you can still be blood tested.

All labs doing fecal antibody testing including Dr. Fine use exactly the same lab tecniques and prodcedures as in the study, so this study applies to his lab as well.

To answer your second question, I was gathering information initally but now my mind is made up about Enterolab, after seeing the research on it.

[jcc]

I want to clarify what specificity of 58% means for the fecal antibody testing.

In the case of the study there were 24 people with celiac and 60 controls (completely healthy people without any intestinal or gluten sensitivity symptoms). The fecal testing found about 22 of the celiac people positive for celiac as well as about 20 of the completely healthy people.

This means that if this test is applied to the real world where the prevelance of celiac/gluten sensitivity is lets say around 5% of the population (a high number but let's say that's true), it will find 30% of the normal healthy people positive for celiac disease. In other words if you get a positive result from enterolab it is likely to be 85% false positive and 15% true positive, making it a truly useless test.

Many people have mentioned that doctors will sometimes do only one test for celiac, but it's possible to just ask the doctors to do all the tests and insist if they don't want to do it, and even if the insurance doesn't pay for it, it still cheaper than Enterolab testing.

Dr. Fine doesn't look for celiac disease. He looks for gluten sensitivity, and he isn't alone in believing that 30% or more of the population have some form of gluten sensitivity. I think it was mentioned previously by someone else that many people with total villous atrophy are asymptomatic.

So, how does one determine whether one is really completely healthy? The doctors always called my daughter 'a healthy 15 year old' in their notes... when she had chronic asthma, chronic sinusitis, seizures and many more vague complaints.

Cara

[CarlaB]

Actually antibodies levels decline pretty slowly (about 10% per month) so being gluten free for one or 2 months is not a problem and you can still be blood tested.

All labs doing fecal antibody testing including Dr. Fine use exactly the same lab tecniques and prodcedures as in the study, so this study applies to his lab as well.

To answer your second question, I was gathering information initally but now my mind is made up about Enterolab, after seeing the research on it.

I was gluten-free for several months and wheat free (more or less) for three years prior to my blood test. I figured out on my own, without the help of docs who always told me I was healthy, that gluten made me sick. I wish I had half the faith in the medical profession as you do! Don't forget, dietary response is clinical proof, even if you don't accept Enterolab.

I hope you don't become a doctor like those I went to who thought everything had to fit in the conventional protocol. Each person is different ... most doctors don't seem to respect that fact and expect everyone they see to fit the same mold.

[jcc]

A tad off topic, but this is very interesting in regard to how it is determined which tests are cost effective, or if it is cost effective to screen an at risk group. You need to register, but access to this article is free.

Serological Testing for Coeliac Disease in Patients With Symptoms of Irritable Bowel

Syndrome: A Cost-Effectiveness Analysis

Open Original Shared Link

IMResident... can you give a source for saying that blood tests are accurate two months after a gluten free diet? I don't think that is generally accepted as true, but I can't seem to find any documentation on it. I know that antibodies can sometimes linger up to twelve months, but I think I also remember reading somewhere that they can drop within the one/two month time period. ?????

Cara

[jcc]

I did find this that said 3 months of a gluten free diet would render the antibody testing inconclusive.

https://www.celiac.com/st_prod.html?p_prodi...-39106468580.c6

I guess the concern would be that if someone were in early stage of disease that might show only a low positive, even a month off gluten might cause them to test negative?

Editing to add:

Didn't want to necessarily get this thread moving again, but I did just bump into something about antibodies sometimes dropping rapidly, and remembered this thread. I knew I had read this before.

Open Original Shared Link

Antibody levels in adult patients with coeliac disease during gluten-free diet: a rapid initial decrease of clinical importance.

OBJECTIVE: Analysis of antibodies against tissue transglutaminase (tTG) has been shown valuable in the diagnosis of coeliac disease (celiac disease) but how quickly serum titres decrease after introduction of a gluten-free diet (GFD) is not known in adults. celiac disease is a well-recognized disorder amongst the general population and many persons try a GFD for fairly vague symptoms before they seek medical advice. Therefore, it is important to determine the time that the serologic tests remain predictive of the disease after the introduction of a GFD. METHODS: Sera were taken from 22 consecutively biopsy-proven adult patients with celiac disease in connection with the diagnostic biopsy. The patients were followed for 1 year and sera were taken after 1, 3, 6 and 12 months after start of a GFD. Sera were stored at -20 degrees C and analysed for IgA antibodies against gliadin, endomysium and two different commercial tTG assays based on recombinant human tTG (tTGrh) and guinea-pig liver (tTGgp). RESULTS: Twenty patients could be followed during GFD and all antibody titres fell sharply within 1 month after introduction of a GFD and continued to decline during the survey interval. Thirty days after beginning the diet only 58, 84, 74 and 53% of all patients had positive antibody levels of tTGrh, tTGgp, EmA and AGA respectively. CONCLUSIONS: As the antibodies used to confirm the diagnosis of celiac disease fall rapidly and continue to decline following the introduction of a GFD, it is important that health care providers carefully inquire about the possibility of self-prescribed diets before patients sought medical attention.

[IMResident]

Dr. Fine doesn't look for celiac disease. He looks for gluten sensitivity, and he isn't alone in believing that 30% or more of the population have some form of gluten sensitivity. I think it was mentioned previously by someone else that many people with total villous atrophy are asymptomatic.

So, how does one determine whether one is really completely healthy? The doctors always called my daughter 'a healthy 15 year old' in their notes... when she had chronic asthma, chronic sinusitis, seizures and many more vague complaints.

Cara

Cara,

what's your definition of gluten sensitivity?

Because if you tested anybody in the normal population, close to 100% would have fecal and blood antibodies against gluten, as well as transglutaminase and anti-endomysial antibodies. In low numbers but they would have them nonetheless. People also have anti-rice, anti-potatoe, anti-vegetable, anti-everything antibodies, in very low numbers. IN fact anything we ingest we have antibodies to. Does that mean that we are all gluten/rice/vegetable sensitive? No, because only in extrememly high numbers can an antibody cause problems, and this is exactly the point of the serum test to detect when the antibodies will cause ilness in a person. Saying 30% of the pop.has gluten sensitivity is like saying all diseases are due to gluten. The highest estimaation for celiac and gluten sensitivity is 1/100 but I am going to say for the benfit of the doubt that it's 5%. Not all diseases are related to celiac, in fact 99% of pneumonia, diabetes, heart disease, diarrhea, neuropathy, depression, asthma is just that, without a celiac conection.

It is a large mistake to tell people with depression, neuropathy, diarrhea , asthma, pneumonia (and 99% of these are not related to celiac) that the cause of all their symptoms is celiac. Because than these people would never get treatement for the ilness and this not only prolongs suffering (imagine years and years with depression) but could also be dangerous and fatal in the long term.

[jcc]

I will only speak to my circumstance. In the case of my daughter, she had an isolated mildly positive antigliadin IgG antibodies of 30 (20-30 weak positive, >30 moderate to strong positive). She had diarrhea for two years, 5-6 explosive episodes daily for over a year. She had daily stomach aches. She complained of leg pain daily, and joint pain in her knees. She had a rough red hand rash on the top of her hands and wrists that was painful. Repeated episodes of a mosquito bite like rash and vomitting. She had fleeting episodes of eyelid drooping, lazy eye, leg drag, staggering, limp body fatigue (like a rag doll, couldn't move), and a couple episodes each of slurred speech, loss of bladder control, and difficulty swallowing (throat spasm like). The leg drag was starting to be there every day.

It has all resolved on a gluten free diet, although she does have GI trouble with a few other foods, no other foods caused the neurologic episodes.

She doesn't have celiac disease. She doesn't even carry the celiac gene.

I think I'll pass on the rest of your post, which I believe might be meant to antagonize.

[ravenwoodglass]

It is a large mistake to tell people with depression, neuropathy, diarrhea , asthma, pneumonia (and 99% of these are not related to celiac) that the cause of all their symptoms is celiac. Because than these people would never get treatement for the ilness and this not only prolongs suffering (imagine years and years with depression) but could also be dangerous and fatal in the long term.

It is a larger mistake by conventional medicine to rely on the blood tests as a main criteria for diagnosis of celiac. IF my family had been tested for celiac disease the depression that almost cost both my and my childrens lives would have been addressed before one of us attempted suicide and one developed paranoid delusions and began cutting and one had the most isolated angry childhood and teen years you could imagine. NO CONVENTIONAL doctor linked our depressive illness to celiac, because none tested for it. Even at my worst no doctor thought to do an endo to check for celiac. After all I didn't show up in their blood work why should they? I suffered years and years of horrible mental and physical pain and some permanent disability because my doctors, at one of the most advanced hospitals in NY, trusted the same lab tests that you are counting on to find all of us. You and most of the other doctors on this continent have a lot of learning to do. Doctors are supposed to first do no harm, for many celiacs the drugs and their side effects when celiac is glossed over because of low positives and or ignored altogether cause years of suffering. You really need to do more research into the neurological effects of gluten intolerance and you need to start looking past the outdated stuff most doctors are taught. I hope you do this before you have your own patients.

[jcc]

Ravenwoodglass,

I'm sorry to hear of your history and suffering.

I've been hanging around celiac boards long enough that I've heard so many similar testimonials over and over.

I met a pathologist several years ago on the Delphi board who suffered severe depression for a very long time...can't remember how long exactly. He tried every medication and therapy there was. Eventually, he was diagnosed with celiac disease. When he began to research celiac disease he was rather appalled by the fact that no doctor treating his depression had tested him for celiac disease, after all... it is a common presentation among adults. There was tons of medical literature linking the two...yet no doctor had ever looked.

I've met others whose primary symptom was depression.

I'm beginning to think Mr. IMresident is just having some fun with us.

Cara

[jcc]

oops...a repeat.

[mle-ii]

It is a large mistake to tell people with depression, neuropathy, diarrhea , asthma, pneumonia (and 99% of these are not related to celiac) that the cause of all their symptoms is celiac. Because than these people would never get treatement for the ilness and this not only prolongs suffering (imagine years and years with depression) but could also be dangerous and fatal in the long term.

Actually it would be a large mistake to tell people who had depression, neuropathy, diarrhea, asthma, pneumonia (and 99% of these are not related to celiac) who removed gluten from their diet and got better that gluten wasn't the problem.

Just like it was a huge mistake to tell folks with Ulcers that it was all in their head and that if they had less stress they wouldn't get them. Seemed that they made a mistake there.

Just like it was a mistake that Celiac Disease is a disease of children and that only the classic symptoms would lead them to this diagnosis.

I'm sure there a great many more mistakes made by our current Drs that will someday down the road have similar resolutions.

And I really don't see how Antibodies to Ttg could be so highly specific, given all the functions of this enzyme and the related tissues, how can their not be other diseases/pathogens that end up causing these antibodies to be produced? This isn't exactly rhetorical either, I'm really interested.

Heck, when did we make this discovery for anti-ttg and Celiac, wasn't it pretty recent? If we went on the studies before anti-ttg was found we'd be making a similar mistake with some other antibody.

Mike

[jcc]

And I really don't see how Antibodies to Ttg could be so highly specific, given all the functions of this enzyme and the related tissues, how can their not be other diseases/pathogens that end up causing these antibodies to be produced? This isn't exactly rhetorical either, I'm really interested.

Heck, when did we make this discovery for anti-ttg and Celiac, wasn't it pretty recent? If we went on the studies before anti-ttg was found we'd be making a similar mistake with some other antibody.

Mike

Fresh this month~

Open Original Shared Link. PMID: 16960894 Sept 2006

And in July~

Anti-tissue transglutaminase IgA antibodies in peripheral neuropathy and motor neuronopathy.

Open Original Shared Link

Antibody to Tissue Transglutaminase May Fall Short for Accurate Triage of Celiac Disease

Open Original Shared Link (must register, but its free)

Strongly positive tissue transglutaminase antibody assays without celiac disease.

Open Original Shared Link

False positive reactions for IgA and IgG anti-tissue transglutaminase antibodies in liver cirrhosis are common and method-dependent.

Open Original Shared Link

couple more false positives~

IgA and IgG tissue transglutaminase antibodies in systemic lupus erythematosus.

Open Original Shared Link

Tissue transglutaminase autoantibodies in patients with non-Hodgkin's lymphoma. Case reports.

Open Original Shared Link

[Shalia]

Blood tests should be mandatory in psych units. Maybe then they would have caught me before I figured out the connection and went gluten-free on my own.

I'm angry too, Ravenwood. Years of life wasted, and it was all food intolerance. Years of drug trials, months in hospitals, time that I'll never ever have back. And I *had* an endo years ago. He didn't even biopsy, when I complained of every major celiac symptom.

No, doctors need to test for Celiac with mental illness. It costs too much in life to not know it's something as simple as food.

[Nancym]

Cara,

what's your definition of gluten sensitivity?

I'm not Cara but let me turn this around and ask you a question. Dr. Fine reports a very high correlation of people who have "gluten sensitivity" > than the cut-off point he defined and people who reportedly have relief of their symptoms once going gluten free. He also has tracked the negatives, some of which went gluten-free and found that most of them had no relief from symptoms. He also finds that not 100% of people have those antibodies in significant quantities. Only about 30% do. (I attended a lecture by him, the slides you can find on the enterolab.com web site).

With many diseases there's a part of the disease process where you're not as sick as the later stages... like... oh lets say "cancer". You don't wake up one day with a fully grown, cancerous tumour. Diseases have progressions, they also have levels of acuteness that vary from person to person. Why would you think that there isn't a progression for celiac disease that... just maybe... y'all haven't figured out how to detect yet?

Anyway, I think a lot of us believe there is something other than black and white, celiac or non-celiac. Shades of gray.

Once you doctor-folks have made up your mind about something... like what causes ulcers, its pretty hard to reprogram your collective consciousness with the new information.

[CarlaB]

I know what you mean about shades of gray, but docs think in absolutes. When I was pregnant, they checked my hemoglobin every couple weeks. It needed to be above 12. If it was 11.8, it was a crisis we needed to address; if it was 12.2, I was okay. Docs need to think and not just do what they're programmed for.

Another point with the fecal testing. I did not read through it all, but only skimmed the scientific study that IMResident posted. Dr. Fine says that all the people he finds are gluten intolerant respond to the diet. He also catches 100% of the celiacs who are already diagnosed.

I am thinking -- if the fecal test IMRes posted was inaccurate, did it pick out all the celiacs and have a problem with "false positives"? Seems like I remember him saying that. If it was a problem with "false positives" could it be that the fecal tests were just more sensitive and picked up a few people who had not progressed in their disease far enough to have the antibodies detected in the blood? I mean, what was the control for the test? We all know that Enterolab picks out more gluten intolerant people than the blood test ... we all know that at some point the intestine is not yet damaged but the damage is starting ... so were we making the assumption that the blood test and biopsy are 100% correct when we know they have false negatives? So, what 100% method was the standard that the fecal tests were measured against?

[gfp]

I know what you mean about shades of gray, but docs think in absolutes. When I was pregnant, they checked my hemoglobin every couple weeks. It needed to be above 12. If it was 11.8, it was a crisis we needed to address; if it was 12.2, I was okay. Docs need to think and not just do what they're programmed for.

Were you actually pregnant or just borderline pregnant?

more tomorrow when I am sober.... (hope you realise the above is rhetoric)

[CarlaB]

Were you actually pregnant or just borderline pregnant?

more tomorrow when I am sober.... (hope you realise the above is rhetoric)

In the beginning I was borderline pregnant, but as the months went on I was definately pregnant.

Go to bed, it's almost time for you to get up and go to work -- you do work, right??

[PatrickCA]

Resident,

First, let me thank you for triggering much thought and discussion. This is a very interesting thread. Thanks everyone!

It is clear that you appreciate the scientific perspective and are looking for evidence. Yes, the verdict is not yet in on Fecal testing. But, it seems that you fail to appreciate the rate at which this field is evolving due to current molecular research (when combined with clinical research). Only six or seven years ago we knew very little about the molecular pathogensis of celiac. Since roughly 2000, however, researchers such as Chaitin Khosla (Stanford), and many others are rapidly uncovering the molecular details of gluten sensitivity.

Is it then surprising that most doctors (whom went to school before then and are not teaching) are currently lagging the state of the art? Even conservative Celiac specialists such as Peter Green, are well aware of this education problem.

It is a large mistake to tell people with depression, neuropathy, diarrhea , asthma, pneumonia (and 99% of these are not related to celiac) that the cause of all their symptoms is celiac.

I don't think any of us are advocating doing this without some clinical and molecular dx information.

But, here you'll need to be a bit more careful. Here, you are, in essence stating an opinion which is not supported by scientific evidence. Do you really know that many cases of peripheral neuropathy of unknown cause are not likely to be a result of gluten sensitivity or celiac? I don't think so. But, you are willing to give a strong opinion anyway. This, is where the medical profession is failing many, many of us, and many others with other diseases. But, alas, I understand you are trying to learn more, and are not purposely trying to get us 'riled up'.

There are several reports in the literature, that suggest (completely convincing evidence will simply require a little more time) that when other causes are ruled out, PN is rather likely to be caused by gluten sensitivity or celiac.

Lancet. 1996 Feb 10;347(8998):369-71. Links

Does cryptic gluten sensitivity play a part in neurological illness?

Department of Neurology, Royal Hallamshire Hospital, Sheffield, UK.

BACKGROUND: Antigliadin antibodies are a marker of untreated coeliac disease but can also be found in individuals with normal small-bowel mucosa. Because neurological dysfunction is a known complication of coeliac disease we have investigated the frequency of antigliadin antibodies, as a measure of cryptic gluten sensitivity, and coeliac disease in neurological patients. METHODS: Using ELISA, we estimated serum IgG and IgA antigliadin antibodies in 147 neurological patients who were divided into two groups. There were 53 patients with neurological dysfunction of unknown cause despite full investigation (25 ataxia, 20 peripheral neuropathy, 5 mononeuritis multiplex, 4 myopathy, 3 motor neuropathy, 2 myelopathy). The remaining 94 patients were found to have a specific neurological diagnosis (16 stroke, 12 multiple sclerosis, 10 Parkinson's disease, 56 other diagnoses) and formed the neurological control group. 50 healthy blood donors formed a third group. FINDINGS: The proportions of individuals with positive titres for antigliadin antibodies in the three groups were 30/53, 5/94, and 6/50 respectively (57, 5, and 12%). The difference in proportion between group 1 and the combined control groups was 0.49 (95% CI 0.35-0.63). Distal duodenal biopsies in 26 out of 30 antigliadin-positive patients from group 1 revealed histological evidence of coeliac disease in nine (35%), non-specific duodenitis in ten (38%), and no lesion in seven (26%) individuals. INTERPRETATION: Our data suggest that gluten sensitivity is common in patients with neurological disease of unknown cause and may have aetiological significance

Also, peripheral neuropathy is a diagnostic convention, rather than a well defined disease. It dosen't say much about cause.

This brings up my final point, in case it wasn't mentioned already. It is now well known that there is a substantially higher rate of autoimmune disesaes that co-occur with celiac. While any possible connections are not clear, one should not assume there is not a connection either. The evidence thus far, is begging for major studies.

Medical science by definition (and perhaps necessity) trys to catagorize where, in reality, such catagories are weakly defined and can become quicky outdated.

I'd guess that in five years many will no longer think of a 5-sample biospy as a "gold standard."

It will seem extremely invasive and barbaric.

But to end, I hope that every medical student resident, does what you're going now more than once, for multiple different conditions. There is much to be learned by 'talking' with individuals.

[jcc]

In the beginning I was borderline pregnant, but as the months went on I was definately pregnant.

You know, all three of my pregnancies followed that exact same course....